‘Nothing About Us, Without Us!’: the clarion call of the disability rights movement, has underpinned decades of disabled people’s activism, rejecting centuries of paternalism and asking for the simple courtesy of being regarded as equal human beings by Governments, service providers and everyone else for that matter. So powerful a sentiment, that it informed the drafting of the UN Convention on the Rights of Persons with Disabilities, which was the first group rights treaty to be drafted by those rights holders it was seeking to protect.

This week though, disabled people and others with long-term health needs in the UK could very much be forgiven for feeling like it might be Groundhog Day, for once again a UK Government has done very much the opposite of Nothing About us Without Us and moved back to ‘Plenty of harm without asking.’ This is just one new salvo in a now 15 year long war of attrition, in which the losers us, our families, our friends and neighbours, along with all the organisations which try to help.

On Tuesday of last week DWP Minister Liz Kendall announced a new Green Paper, proposing changes to the way that eligibility for Personal Independent Payment (formally DLA) is assessed, who can access it, and how health and disability issues are taken into account in Universal Credit payments (UC and PIP were both the brainchild, if you remember, of Iain Duncan Smith, having once met some working class people in Glasgow and deciding they needed helped up by their bootstraps, in a spectacular example of how the Conservatives defined ‘helping’.)

PPR currently organises with homeless families, people who have been through the asylum system,  those with enduring experiences of mental health and trauma, carers and people in poverty. It’s fair to say that the proposed changes to social security entitlements will affect almost everybody we work alongside in some way, with particularly concentrated effects on people who have experienced trauma and related emotional distress. 

‘Nothing About Us Without Us’, it seems, is a bridge too far for the current occupants of Causeway Exchange.

Notably however, while people in Northern Ireland are welcome to feed into the UK Government’s proposals by participating in its consultation, as welfare remains within the purview of the Department for Communities, their responses will simply be ‘passed on.’ Well, that’s a relief, especially in a week in which the Communities Minister justified scrapping co-design frameworks that had previously encouraged participation and knowledge-sharing by non-government experts, telling the Newsletter that “he won’t outsource policy decisions to lobby groups” after being criticized at committee for not allowing  special interest groups ongoing involvement in drafting equality strategies. ‘Nothing About Us Without Us’, it seems, is a bridge too far for the current occupants of Causeway Exchange.

Why is a UK government which states multiple times that it is committed to ‘putting the views and voices of disabled people and people with health conditions at the heart of everything we do’ only actually consulting on a few of the changes it has proposed making? None of the  measures which will most seriously affect people’s pockets or their experience of the welfare system, have made it into the consultation.

And in an absolute classic of the genre, the Government has failed to publish their proposals in any accessible format other than large print. No easy read, no BSL, no braille. When Sian Berry MP among others pointed this out, you could almost hear the scraping of chairs in DWP HQ Equality Unit. If you’re an easy read provider, we send strength for those having to translate the reams of waffle into something that can support conversations with people with learning disabilities about decisions which could significantly impact their income. But as Dr Courtney Buckler, senior policy and campaigns manager for the National Survivor User Network, says, the government's explanation that the accessible versions "require additional time" to produce is not good enough. "There is nothing 'additional' about the time it takes to make a consultation about/for Disabled people accessible to Disabled people," she said. "If the documents aren't ready, the consultation isn't ready. Accessibility is not an add-on.”

If you are worried about how the proposed changes may affect you, please be assured that many of them are not due to start for some time and some are subject to further consultation. If you’d like to get advice about your social security entitlements, please follow the links below. 

• East Belfast Independent Advice Centre 028 9073 5690

• Advice North West 0300 303 3650

• Advice NI 0800 915 4604

Bear in mind that advice services may be very busy as lots of people are wondering how these changes may affect them.