On Monday, as MPs and peers begin to return to Westminster to debate the final stages of the controversial welfare reform bill, sick and disabled people from around the UK will present their own report to parliament. We are not a think tank or a charity, simply thousands of individuals with talent, experience and a forensic knowledge of how the bill will affect every aspect of our lives.

For years, sick and disabled people have been coming together through social media. Social networks can provide a community for those who find it harder to engage physically in society. The internet does not discriminate. A writer or campaigner is as good as their message, regardless of age or ability.

George Osborne announced his emergency budget back in June 2010, revealing a 20% cut in Disability Living Allowance (DLA). Later, as he outlined his comprehensive spending review, we watched in shock as every element of support we rely on was either scaled back or swept away.

Casually limiting sickness benefits to just one year, halving tax credits for disabled children, scrapping the Independent Living Fund and severe disability premiums, slashing local authority care budgets, changing housing allowances and threatening our homes – Osborne dismantled them all.

As we argue in our report, these benefits are not a luxury for sick and disabled people: “For this group, above any other, social security is not an abstract term. It is often, literally, the security to live in society with the same inherent freedoms that anyone might enjoy.”

Politicians made emphatic statements pledging to support the most vulnerable, all the while arguing for policies that would make them more vulnerable still. They assured the public that changes were being made in consultation with disabled people, yet ignored our concerns at every stage. We see this lack of regard for the views of disabled people in David Cameron’s comment on Tourette’s. It is this ignorance that seems to underpin the entire bill.

As the months passed, the voices of sick and disabled people grew stronger. Every day, hundreds of new supporters read our research and joined our campaign. They were not the feckless, needy and incapable portrayed to the public, but scientists, statisticians, researchers, lawyers and writers.

It became clear that if we didn’t oppose these plans ourselves, no one was going to do it for us. Politicians were united over the need for reform, and unwilling to speak for us. The media either ignored our struggle or discredited us with ever wilder rounds of “scrounger” headlines, creating a climate of fear and prejudice.

We attended political conferences and welfare forums yet still politicians refused to engage with us. Last October, the government published a final impact assessment into DLA reform that was almost identical to the original. The overwhelming opposition of disabled people had been entirely ignored.

We had to make one last attempt to be heard. I launched an appeal to raise the money to publish a report and send it to MPs, charities and peers. Astonishingly, we reached our target in just 24 hours. The report, Responsible Reform, is entirely written, researched, funded and supported by sick and disabled people.

It analyses over 500 group responses made to the government’s consultation on DLA reform – information that we had to get through a freedom of information request. It looks at the government’s evidence for abolishing DLA and the legal implications of the reform.

The results are shocking. Overall, we found that of those who responded to the government’s consultation, 74% opposed the plans. On individual issues, the opposition was stronger: 98% objected to making people wait longer before they could access financial support; 92% opposed scrapping the lowest rate of support for disabled people; and 99% objected to DLA no longer being used as a qualification for other benefits.

The DLA consultation also breached the government’s own code of practice. The consultation was two weeks shorter than usual, and the legislation was presented to parliament two days before the consultation closed – making it impossible to take into account. Most importantly, the government response to the consultation was highly misleading, claiming a support for its personal independence payment proposals that simply wasn’t expressed.

As evidence of the need for reform, the government has always claimed that DLA figures have risen by 30% in eight years. However, our analysis shows that this too is misleading – in fact the government has admitted that it gives a “distorted view”, yet continues to use the figure when pushing for reform.

Above all, we found that when sick and disabled people can design their own working models, they can be productive, empowered and creative. New technologies open up a new way of engaging with work. If we can fit tasks around our disabilities, we can contribute our huge potential. Among politicians, “reform” has become a byword for cuts; yet, as our report shows, true reform ought to find solutions to make Britain fairer, more inclusive and more productive. That we should have to go to such extremes to be heard should concern – and perhaps shock – us all.

By Sue Marsh
guardian.co.uk, 8/1/2012