Ask not what the UN can do for you, but what you can do for the UN

When we first heard that the UN would be reporting on the progress the UK has made at implementing the UN convention on the rights of people with disabilities, your response was overwhelming.

In a way I've rarely seen before, people saw UN involvement as a once in a lifetime opportunity. More, they saw it as a lifeboat, not waving but drowning, hoping the wider world will see.

At a time when sick and disabled people feel more attacked and less heard than they have for generations, we all seemed to cling to this opportunity. I think it had become clear that our own UK government would compromise on nothing. They seem the least able to see or hear that we exist at all.

I asked people to email me with their stories to submit as case studies and my inbox exploded with fear and misery. I only asked very specifically for stories from those affected by the 1 year time limit of ESA, as this was the area I was going to focus on. Yet I got so many replies, it took me three weeks to reply to each one individually.

The pain in those messages was palpable, urgent, frightened. Just reading their suffering drained me as story after story flooded in. I practically got Stendhal syndrome from all the gasps of shock. Weeks later I still felt very down and defeated.

A thousand inbox whispers became a mighty roar. Together they painted a picture of the UK in 2014 that is beyond the comprehension of most.

The day I posted the call for evidence, a friend from one of the major charities DMd me, suggesting it might be unfair to big the news up too much as the UN couldn't actually change anything. They have no jurisdiction under UK law and she worried it might be cruel to give false hope where none exists.

Unless you're a campaigner, her lovely advice and care for people might seem logical. Why put so much energy into something that can't actually make our lives immediately better?

But I've learnt the power of hope. From the day I launched this blog, we've all had the most impact when we shout together. However, sick and disabled people have shouted and shouted, endlessly and urgently, yet no matter how we cry out, no-one could hear us. As we sank out of view, few even knew to wonder where we'd gone.

I think that even the most pragmatic of us had all learnt very clearly by then that this government were not willing to compromise or listen in any way at all.

Like any minority, if all you have is the hope that, one day, things might get better and this whole sorry mess will end, just being heard at all is incredibly cathartic.

Over and over, people begged me to tell their stories, begged me to amplify their individual voices into something that could be heard. I think this UN report might be the most important thing we've done so far. The number of people who asked me to keep their stories anonymous told me all I needed to know about the climate of fear sick and disabled people are currently living under.

The UN have been very specific about what they need :

The "shadow" report needs to be succinct. They only want 30-40 pages, which might sound like a lot, but in report terms it's very tight indeed They need people to produce a 30-40 page report that is well referenced and any statement that makes any kind of claim has to be backed up with evidence.

They want one united response that disabled people in the UK can support and get behind. 
Several groups have started their own reports, but it might be that no one report can say everything. Clearly, groups could still submit their own work independently, but it's vital that we also produce one overall submission as an official UK shadow report that we can all rally behind and support

All claims must be supported with evidence. The examiner has only got 10 days later this year to finalise his report. This means that the more groundwork we can do for him and the more evidence we provide in advance, the easier his job will be and the more impact his report can have.

Of course the overwhelming problem is what to leave out, not what to include. With so little space and 50 articles to the convention, it's imperative to make sure that as many issues as possible are included, hence prioritising a few of the most urgent ones. Agreeing what those issues will be is vital.

Often a collective endeavour is more valuable than the sum of its parts. Very occasionally, an opportunity comes along that is so important, so urgent, that we owe it to ourselves to come together and present the strongest presence we can. Sick and disabled people have an unprecedented record over many decades of being able to do just that at the really crucial times. Unlike other campaigners, we never quite allow our coalitions to fall apart when co-operation is vital.

I'm really excited about seeing the finished report that's produced in the end. I know all of you will be too. I know how desperately you want every last word to be used carefully, that not a single one is wasted. We have a duty to do our best for all disabled people in the UK, for everyone's stories to be heard.